An Endometriosis sufferer’s fight to raise awareness

Endometriosis – An Uncommonly Recognised Condition

Aleks campaigning to raise awareness

Aleks Wells from Newbury, Berkshire suffers from a little known disease called endometriosis.

“I have endometriosis. It’s unlikely that you know what it is; despite the estimated one in 10 women potentially suffering from it, the awareness of the disease is still very low. And yet it’s had the most profound effect on my life.”

A Long and Difficult Diagnosis

Diagnosis can take years and can involve pelvic examinations and scans.

“Women with endometriosis grow endometrium – the tissue that normally lines the uterus and is designed to bleed during the monthly cycle – outside of it. When it happens, the blood can’t escape the body in the form of a period and is trapped inside the abdominal cavity. The resulting irritation and inflammation can lead to ovarian endometrial cysts as large as 15 cm in diameter and in advanced stages, adhesions where fibrous tissue causes internal organs to stick together. All that is potentially extremely painful. All that invisible. All that potentially harmful to the effective working of the female reproductive system.

“I was diagnosed with endometriosis in June 2014, after years of painful periods. 12 years after a misdiagnosis with “potentially, maybe” Polycystic Ovaries Syndrome; the doctor “couldn’t be sure”. 10 years after a correct diagnosis which was only ‘by the way’ and whose significance I didn’t understand. Throughout that time, the doctors repeatedly dismissed my painful periods and told me to simply “get on with it”. Mine is not an isolated case. A correct diagnosis can take years and even the NHS website warns about the difficulties caused by the nature of the symptoms.”

Daily Living with Symptoms

The symptoms of endometriosis can range from mild to severely debilitating, but are generally invisible to others which is why diagnosis can take so long and why it is not a commonly understood condition.

Aleks and friend at the EndoMarch

“The symptoms of endometriosis include severe period pains, cysts and adhesions, severe exhaustion and depression. Other, rather awkward, symptoms of endometriosis include irritable bowel and bladder. That means the constant feeling of needing to go to the loo: at home, at work, at airports, during exercise, during the day and at night. These are subjects that can be embarrassing to talk about and can delay the correct diagnosis. I used to feel very uncomfortable discussing these matters with my doctors.

“Today, I am not even embarrassed about it anymore. I’m just exhausted by the constant qualification of any activity with the ‘will there be loos there?’ Queuing to the loo feels unfair; I surely need to ‘go’ more urgently than other ladies in the queue. I’m constantly excusing myself during business meetings. I’ve been avoiding excursions that involve being away from the loo – you don’t want that kind of accident. But that’s my reality. That’s my life.

“The treatment, which is in effect reduced to managing symptoms as there isn’t a cure, isn’t straightforward. For me, it has so far involved two surgeries, and a three-month long course of harsh drugs used for breast and prostate cancer, which caused an induced menopause and extreme exhaustion. My inability to work for five months made me worry greatly about the future. For now, I’m clear, but the endometrium may grow back in my abdomen and the cycle may start again. Indeed that’s the reality for many women.

“One of the most prevailing themes when discussing endometriosis, is a lack of awareness of the disease. This is a major obstacle for its sufferers in gaining access to the right specialists, the right treatment, and the right support groups.”

Raising Awareness

Aleks is determined to raise awareness of this condition to further research and improve diagnosis rates for others.

Aleks and other campaigners at the Endometriosis Awareness March

“Raising awareness is key. That’s why since my diagnosis last year I’ve been involved in a number of activities that could help raise it. In March 2015, I joined thousands of other women and men in my first Worldwide Endometriosis Awareness March. I’m part of the local support group endorsed by the leading charity, Endometriosis UK. My blog, Surviving Endometriosis, focuses on the psychological aspects associated with the condition, the prejudices of the society towards those with endometriosis, and the effect it may have on the vulnerable sufferer with reduced resilience. There are also many online forums which help with any ad hoc questions my fellow sufferers and their families may have.

“I wish I had a way of alerting others to my condition in case of emergency. The rapture or torsion of the seven- and three-centimetre cysts, which I developed on my ovaries could have caused severe internal damage. I would like to have had some way of alerting the medical professional as to what they would be dealing with. A medical ID band would be just the ticket. I think everybody with any kind of disease should be encouraged to invest into one. The bands are always a great way to share awareness and so the more people are aware of what they are and their purpose, the better.”